The week from Academic and Appointment Hell

I’ve been both dreading and eagerly awaiting the week for weeks now. On the academic side, I have an annotated bibliography, needs assessment report, midterm, lab test, poster creation, presentations and I’ve been planning a program for my local university. Needless to say, this week academically is very very busy. In addition to all the crazy school stuff, I have two volunteering commitments AND two major appointments “scheduled”

So, late last week I had realized I hadn’t received any confirmation calls, which I always have. So I decide to give both my neurologist and pain management offices a call to double check that I didn’t miss the call..

Yesterday, I heard back from my pain management clinic, which was scheduled for Thursday at 2PM and I’ve had this appointment since September. Apparently whomever scheduled me failed to realize that my physician never works on Thursdays, and that I would have to wait till the next available appointment with her which is on May 12th…. So I was annoyed that I would have to wait an additional two months, but since I was scheduled to see my Neurologist this week, I was less of an issue.

This morning, I received a call from my neurologists office stating that I did not have an appointment this week, and that instead it was two weeks from now, This is when I started to get very very angry. When I received this appointment date months ago, I had immediately called the office to change the date, as I am not available. I had even received a confirmation letter of my appointment for tomorrow morning at 9:30.. My only option at the time was to wait until June for his next appointment.. :/  BUT thank my lucky stars, someone cancelled tomorrow so I will end up seeing him, and I have no idea what to even think about tomorrow…

The plan of my neuro appointment tomorrow is for him to tell me what is wrong. If my CM is primary or secondary, and whether or not my Chiari malformation is rapidly growing (Initial testing shows the development of a 6 MM herniation in 4 years, instead of my entire life)

I’m afraid I am getting to hyped up about this, and that he is going to let me down like he has before.. I’ll update you guys tomorrow (as long as nothing goes wrong) or by the weekend!

🙂

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After all these years, my brain still doesn’t know that it needs to stay in my skull.

Well, if you’ve been following my tweets lately, I have received some massive news. I have been wonderfully graced with low lying cerebellar tonsils, or a Arnold Chiari Malformation. In layman’s terms, my cerebellum has herniated, roughly 6 mm out of the regular area in the brain. Weird eh?

In my most recent MRI, I had some extra fancy imaging done, a MRA and MRV, so I got the fun dye in the veins, and also was supposed to have an additional cage around my chest. So not only did they plan to put the cage of doom over my face, they also put one on my chest, THEN tightened it. Now, I am not usually claustrophobic, but after 20 minutes of the technicians trying to find a vein, and multiple botched attempts, I was already anxious and there was no way I was going into a tiny hole with a tight cage around my chest.

My past MRI was at a children’s hospital. It was a nice big machine, with lots of clearance between my face and the top of the chamber and no chest cage… Unfortunately, since I am 20, I wasn’t able to go to the same imaging centre. So I was sent two hours away from home, to a small town so I could get my scans done ASAP. The downside? The clearance between my face and the top of the chamber was miniscule. I could feel my breath return to my face on each breath and on top of that when they tried the whole chest cage, I couldn’t take a deep breath, and they said it wasn’t an option to not have it on.. Holy.. que claustrophobia..

15 minutes later of me freaking out, the cage was not required.. it just enhances photos.. all of that for nothing :/

Fast forward two weeks, I find out that my brain doesn’t know where it is supposed to be.. and maybe this means my CM is secondary, not primary.

I’ll know this week, hopefully the final answer.

It’s weird to think I could be pain free, I don’t remember what it feels like to be pain free. but I can’t get my hopes up.

Any of ya’ll have a arnold chiari? Let me know:)